Education

Higher Education Modules

Patient Zero and the Early North American HIV/AIDS Epidemic

Class 3: AIDS and Infectious Disease Epidemiology

Introduction

In 1981, the recognition in the United States of a seemingly new and often fatal disorder—noticed first amongst gay men and later seen amongst injection drug users, blood product recipients, and some Haitian immigrants—led to the involvement of epidemiological investigators from the U.S. Centers for Disease Control (CDC). In a series of studies, the CDC attempted to unravel the complex medical, social, and environmental factors that might have placed these individuals at increased risk for the condition, which by mid-1982 had become known by the acronym AIDS. One investigation, the 1982 Los Angeles cluster study, attempted to trace sexual connections among a number of gay men residing in California who were amongst the earliest reported cases of AIDS in that state. A non-Californian man with Kaposi’s sarcoma (KS)—a type of skin cancer often used as a way of diagnosing AIDS before the discovery of a causative retrovirus—was linked as a sexual contact to four of these patients. This individual’s status as the “Out-of-California” patient was originally abbreviated to the letter “O,” which in turn was given additional resonance when researchers read this as the number “0.”

The initial results of the Los Angeles cluster study were published in the Morbidity and Mortality Weekly Report in June 1982, and made reference to “the non-Californian with KS.” A more detailed analysis which extended the cluster of AIDS cases linked through sexual contact to include 40 men in 10 cities appeared in 1984, by which time this individual received the designation “patient 0” and a central position in a diagram depicting the sexual network. While his central role in cluster study would later come under criticism, as Moss’s 1988 letter makes clear, “patient 0” and the cluster study were viewed by many in 1982 as important evidence for the possibility that an unknown sexually transmissible agent caused AIDS.

Oppenheimer’s chapter sets the context for the CDC’s AIDS investigations between 1981 and 1990, and highlights the multifactorial disease model that is central to epidemiology and which represents, he argues, the discipline’s strength as well as its weakness. Grover offers a strong critique of the concept of an “AIDS carrier” and the focus of the media on “patient 0,” arguing that the language used in public discussions of AIDS serves as a vehicle for the reproduction of dominant social power relations and prejudices.

Oppenheimer, Gerald M. “Causes, Cases, and Cohorts: The Role of Epidemiology in the Historical Construction of AIDS.” In AIDS: The Making of a Chronic Disease. Elizabeth Fee and Daniel M. Fox, eds. Berkeley, Los Angeles, and Oxford: University of California Press, 1992, pp. 49-83.

Discussion Questions

How did the initial recognition of AIDS amongst certain socially marginalized groups shape the early investigations and responses to the epidemic in the United States? How did researcher interest in and access to sick members of these groups affect what became known about AIDS?

To what extent did the recognition that people with AIDS included certain injection drug users, hemophiliacs, Haitians, and heterosexual women, and not solely gay men, change the public health and wider social responses to AIDS?

What was the perceived significance of the cluster study when it was first published in 1982? In 1984? In 1987 and later? In what ways had knowledge about AIDS changed in the intervening years?

What functions does the cluster diagram (Fig. 1) perform in the 1984 article? What aspects of the collected data discussed in the article are rendered visually? What do these choices emphasize? What do they omit?

Grover explores the ways in which language can convey social assumptions and misconceptions. Does “patient 0” have a precise meaning? How have different groups interpreted and defined the term?